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So, I saw my doc yesterday - the latest titer came back 1:8 - no increase/no decline. She has put in a referral for the LP. We are trying to do it on an outpatient visit - but having a hard time getting a routine LP scheduled anytime before October, so, I will be finding out tomorrow if I will be admitted overnight to the hospital within the next week to be able to get it done (she thinks that would be quicker - even though she is reluctant to do it). She says if it comes back neurosphyilis then I would probably be in the hospital for a few days and perhaps sent home with an antiobiotic pump - but she couldn't be sure of that.

In other news, latest labs showed a slight decline in the cd4s - which fluctuate anyway - down from an all time high to 667 (still not bad) and 36% (has been going down over the last few labs - but doc says nothing to worry about and still within acceptable range of 30-61%) and the VL is UD (<20 copies).

Damn. Good luck, Phil. I think that the sooner that you handle, the better (even if it is uncomfortable).

Hugs

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Good luck, sounds like your doc is on top of things. It might be better doing the lp inpatient. Didnt you say you live kinda far from the hospital? At least if you do i inpatient you could stay lying down and hopefully avoid the lp headache. Besides i you do get it, they have better drugs at the hospital. I would push for the morphine drip kf its on the menu. Maybe you could even get a sponge bath out of it.

It might be better doing the lp inpatient. Didnt you say you live kinda far from the hospital? At least if you do i inpatient you could stay lying down and hopefully avoid the lp headache. Besides i you do get it, they have better drugs at the hospital. I would push for the morphine drip kf its on the menu. Maybe you could even get a sponge bath out of it.

Yeah - I do live about 10 miles from University of Miami hospital - where I would be admitted. I actually would prefer the inpatient - so that I can stay laying down and so that they can deal w/ any post LP headache I might get. Morphine or dilaudid - would be nice to have on the menu (Even though those who know phild know that I avoid painkillers at all costs )

I really just want to get the procedure over with and move on as the waiting thing is the most difficult.

So.... after literally calling Radiology (who my doc referred me to), then calling Interventional Radiology, then calling another department in Radiology, and then calling the specific doctor within Radiology - I have finally got the date set for my LP (as an outpatient procedure). It will be done on Monday, August 22nd.

Of course the labs I had done on 7/25 can't be used - so, my doc had to send me a requisition for new labs (ProTime, CBC, PTT and INR)(??) - I will get these done on Monday, 8/15, so they will be "fresh" for the doc.

Hiii Phil,we share an common enemy, so you have my support and prayer all the way.when I found out I was hiv positive, syphilis came with the combo. I'm still processing an on going treatment, already had 3 butt cheeks shoot, missed the last one. Have to redo it all over again ugh. got one injected about two days ago, ass still hurt. Two more to go. So six total in less than a month and a half, oh the joy.

though, i can't compare or imagine how LP is going to be like for you. ๏̯๏I hope it will goes quickly, and painless for you. maybe after the treatment you and I should retaliate syphilis with a club. =P

Hope to hear from you soon again after 8/15. Best wishes, and bravery!-Timmy

And the fucking saga continues...So, after going in for labs on Monday - because the doc doing the LP said I have to have labs within one week of the procedure - scheduled for Monday, August 22nd, I get a call yesterday from the doc's office that is doing the procedure asking why my doc referred me to him - when he typically doesn't do routine LPs, but only ones for those patients that docs could not successfully do one on before....

I explain the run around my doc and I both got and that we had finally been told that he would do --- so..... the call ends with no problem - procedure scheduled to occur as planned for this coming Monday.

Well, today I get a call from the doc's office doing the procedure - he has been trying to reach my ID doc to see why she referred me to him ---- giving the same reasoning mentioned above. BUT, he can't reach her, because she is out of the office this week...... SO, I am now being told that until he talks to her to clarify why she referred me to him, the procedure is being cancelled....

What does this mean for me? Well, first I AM PISSED.... I now have to get the labs done again (whenever they decide that they want to do the dayumm LP - which can't even happen til after he talks to my doc), I have to cancel my time off from work that I had already moved appointments around to accomodate, I will then have to put in for different time, reschedule appointments, also get labs done again, etc, etc

Did I say I AM PISSED OFF? I called my docs office and cussed them out and just sent her an email letting her know that this all could have been avoided had she done what I had requested and just admitted me to the hospital for 23 hours to get the LP done - but no, she wanted to go the OP route ----- and said, if we have any hassles then she would go with the inpatient ---- well..... NEWSFLASH - WE ARE HAVING HASSLES.

BTW, did I say that I AM PISSED? Hopefully, she will respond to my email today (even being out of the office), she will talk to the other idiot (I mean doctor), and they will proceed with the LP for this Monday ------ especially after the chancges I have gone through and getting myself mentally ready for it...

So, in the meantime... I continue to wait and the syphilis continues to go untreated --- lovely..... BTW, did I say I AM PISSED? and the saga continues....

I'm sorry to hear you are getting this kind of run-around -- it sounds absolutely ridiculous. Especially after having your labs drawn already.

I am pissed off just reading this.

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Phil , I'm SHOCKED that the State Dept. of health in whatever state you live in hasn't gotten involved in any of this, providing that they even know about any of this yet.............good luck, and you really need to be treated ASAP, it's shocking that your not getting any

« Last Edit: August 17, 2011, 04:34:43 PM by denb45 »

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My ID doc just emailed me and told me that she talked with the doc that is supposed to do the LP on Monday - and he has agreed to do it. She said I should get a call from his office tomorrow confirming the Monday appointment. She agred that the difficulties and hassles I have been experiencing in getting this done are unacceptable and apologized. Hopefully, the call will come tomorrow.

While I am happy that it seems to be working out - I now have some expected apprehension about having a doc perform the procedure who really doesn't seem to want to do it. But, I will get over that --- I just want to get the procedure done and find out what is going on so I can treat it (either in the hospital with antiibiotics or, if not neurosyph, than with the cement butt shots).

Of course, until I am there on Monday and laying on the table - I won't really believe that it is happening (almost like hooking up with a trick on a website - you don't really believe they are coming over to do the deed until your in bed with your legs up in the air -------- I love analogies)

Well that's good news, but let me warn you about something, your State Dept. of Health ( after your doc tells them about your Syphilis) and they will cause it's required by Law, they will follow up on this, and contact you, make sure you communicate with them about your treatment, cuz they can & will get nasty if you don't and Phil, I hope it all works out, I'm sure it will

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Well that's good news, but let me warn you about something, your State Dept. of Health ( after your doc tells them about your Syphilis) and they will cause it's required by Law, they will follow up on this, and contact you, make sure you communicate with them about your treatment, cuz they can & will get nasty if you don't and Phil, I hope it all works out, I'm sure it will

Hi Den -Thanks for the advice --- actually when my first titer came back almost two months ago at 1:8 the health dept got in touch with me and I let them know that I was following up with treatment through my doc at UM. Nice thing (if you wanna call it that) is that I haven't been sexual with anyone since finding out - and my ex - who I still mess around with - got tested and he is okay. We have put the brakes on things until I get it all worked out. Thanks again for the concern - it is definitely appreciated.

So, let me fill you in on the latest..... I received a phone call today at noon informing me that the procedure would be done on Monday and that my copay would be $100. I also received notification of the appointment via my electonic medical record online. So, I scheduled various work meetings to occur on Tuesday and Wednesday afternoon. Well, at 4:30 I received a call from the doctor's office informing me that the doctor had talked with my doctor; however, they had already filled the Monday slot. She asked if I could come Tuesday or Wednesday. I let her know that I could not as I had already had prior commitments.

I am now scheduled to get the procedure done on Thursday, August 25th (65 days after I received the first results of the titer). I was unwilling to change my Tuesday or Wednesday work commitments because of all of the games and hassles I have had up to this point. So, I should be getting the procedure done on Thursday. If this doctor's office calls to cancel the Thursday appointment for any reason, I will have to look into putting in some type of complaint to the appropriate person as I really think that their handling of this has been unacceptable. I don't think it was appropriate for them to fill the slot with someone else, particularly after they had talked to my doctor and after I had received both a phone call and an online confirmation that the appointment was going to be Monday, August 22nd (as originally scheduled).

Phil why don't you just go the State or County run free Health clinic, and get the 2 cement-shots and be done with it, they will even re-test you for free again, and re-treat you if they need too, why prolong this agony

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Phil why don't you just go the State or County run free Health clinic, and get the 2 cement-shots and be done with it, they will even re-test you for free again, and re-treat you if they need too, why prolong this agony

If he has neurosyphilis, then this method won't work at all. The LP is needed to determine and diagnose that.

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Phil why don't you just go the State or County run free Health clinic, and get the 2 cement-shots and be done with it, they will even re-test you for free again, and re-treat you if they need too, why prolong this agony

My ID doc could have done the cement shots - the problem is that this is my second recurrence ---- after having been treated twice before (once around 5 years ago or around then and then again around 3 years ago) --- the recurrences, along with the slow increase in the titer are leading the doc to believe that it is neurosyphilis - which is why I need the LP to see if it is..... othewise, if I get the cement shots, it will take the titer down temporarily, but, if it is neurosyphilis it will just come back..... eventually, if I keep getting the cement shot treatments - and it is neurosyph - the doc says that it may get resistant to the treatment - which will really create a major problem. Thus, I have no choice at this point but to get the LP (which they are giving all the hassles with) so we can figure out the best treatment route.

If he has neurosyphilis, then this method won't work at all. The LP is needed to determine and diagnose that.

My guess, he probably doesn't have neurosyphilis anyway, and it really won't matter, the State will still try and treat no matter what your ID doctor says, that's the way they do it here in New Mexico, why I dunno, but it is what it is, @ Phil this sucks, I hope your doctors get there shit together, it sound like they don't know what-the-fuck they are doing

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My guess, he probably doesn't have neurosyphilis anyway, and it really won't matter, the State will still try and treat no matter what your ID doctor says, that's the way they do it here in New Mexico, why I dunno, but it is what it is, @ Phil this sucks, I hope your doctors get there shit together, it sound like they don't know what-the-fuck they are doing

Thanks Den -I'm hoping it isn't the neurosyph - in which case I will get the shots (I don't know if it will be one round or three)If it is neurosyph - then doc says I will go in hospital for 2-3 days then be sent home with an IV pump of antibiotics - and a visiting nurse to change it out for another 7 or 8 days.

UM is usually pretty on top of things - but this has been one of the rare times when they are just fucking up all the way around.

Thanks Den -I'm hoping it isn't the neurosyph - in which case I will get the shots (I don't know if it will be one round or three)If it is neurosyph - then doc says I will go in hospital for 2-3 days then be sent home with an IV pump of antibiotics - and a visiting nurse to change it out for another 7 or 8 days.

UM is usually pretty on top of things - but this has been one of the rare times when they are just fucking up all the way around.

If you do have neurosyph, you'd be blind or deaf by now or insane, my guess is you don't, I hope that it's not and these fucking doctors, wow some of them really got there-head up there ass don't they

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

If you do have neurosyph, you'd be blind or deaf by now or insane, my guess is you don't, I hope that it's not and these fucking doctors, wow some of them really got there-head up there ass don't they

Unfortunately, that is what makes my doc think it could be neurosyph ---- because when I frst got diagnosed with it 5 or so years ago - I actually did go deaf in my left ear --- had to get a hearing aid and everything. Then, after the treatments, the hearing came back.... so, doc thinks with the recurrences and the slow rise in titer and the previous hearing loss, that it could be latent, neurosyph.... hoping not.... that is why the anxiety about getting this LP out of the way.

Unfortunately, that is what makes my doc think it could be neurosyph ---- because when I frst got diagnosed with it 5 or so years ago - I actually did go deaf in my left ear --- had to get a hearing aid and everything. Then, after the treatments, the hearing came back.... so, doc thinks with the recurrences and the slow rise in titer and the previous hearing loss, that it could be latent, neurosyph.... hoping not.... that is why the anxiety about getting this LP out of the way.

Well let's hope you don't, if you do the way it's treated is w/ a pick-line and a 14 day IV-pump, that you'll have to change every 8 to 12 hours, NOT FUN, I had the change it when my otherhalf had this, but come to find out he really didn't have neurosyph, his LP came back NEG, but his titer was a lot higher than yours, so they give him that 14-day-pump, when all he really needed was the cement but shots, that the State give him anyway, after the IV-pump

Edited to ADD: we think the State did this cuz I'm POZ and he's not, and I was non-reactive for the last 25 yrs. wich was kinda strange, that I didn't get THIS from him, but i was lucky cuz I still tested non-reactive

« Last Edit: August 18, 2011, 08:08:46 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

We are hoping it isn't the neurosyph - but the slow rise in the titer (from 1:2, 1:4, to 1: eight), per my doc and the previous symptoms (hearing loss before) lead my doc to think it is ---- she said she would not be as likely to think that if the titer was a lot higher --- the insidiousness of latent is the slow progression (from what she says)..... I would rather just go through the shots - which I wouldn't be surprised if I still have to get even if they find neurosyph, treat it with the IV over the two week period. But, I am hopeful that they do the LP Thursday, find out it isn't, and then I can go in the following week and get the shots.

Why did they put your partner on the IV without having the LP results back showing that it wasn't neurosyph, if I can ask?

Aside from the scheduling bullshit and the dr thats doing the lp stuttering over it, to me it sounds like your id dr DOES know what she is doing, and would tend to agree that you should follow her instructions.

We are hoping it isn't the neurosyph - but the slow rise in the titer (from 1:2, 1:4, to 1: eight), per my doc and the previous symptoms (hearing loss before) lead my doc to think it is ---- she said she would not be as likely to think that if the titer was a lot higher --- the insidiousness of latent is the slow progression (from what she says)..... I would rather just go through the shots - which I wouldn't be surprised if I still have to get even if they find neurosyph, treat it with the IV over the two week period. But, I am hopeful that they do the LP Thursday, find out it isn't, and then I can go in the following week and get the shots.

Why did they put your partner on the IV without having the LP results back showing that it wasn't neurosyph, if I can ask?

Cuz he had this over zealous doctor, that didn't know what the fuck he was doing ( fresh outta med-school) also when the State give him the but-shots,( after that 14-day pump that this doctor put him on) I had to get them too, as a pre-cautionary measure I WAS PISSED, I mean I hadn't had Syphilis since 1981 when I was in the NAVY due to me being non-reactive, and being POZ, they put me thur HELL, cuz he had never had this before, and we always have safe sex, most of the time cuz he's a neggie...

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Dayummm Den - I can onlly imagine - I would have been pissed too. Well, I'm just ready to get this thing done and do whatever I gotta do to treat it and move on.....

I checked my online health chart and they still have me scheduled to go on Monday - for the x-ray that was supposed to occur before the procedure - so, now I have to call tomorrow and find out why the fuck they haven't changed that ---- so, I don't get hit with missing a scheduled appt - or go in on Thursday and they ask why I didn't get the x-ray ----- I am seriously getting close to telling this doc's office to pull their heads out of their asses..... UGGGGHHHHHHHHHHH.

Dayummm Den - I can onlly imagine - I would have been pissed too. Well, I'm just ready to get this thing done and do whatever I gotta do to treat it and move on.....

I checked my online health chart and they still have me scheduled to go on Monday - for the x-ray that was supposed to occur before the procedure - so, now I have to call tomorrow and find out why the fuck they haven't changed that ---- so, I don't get hit with missing a scheduled appt - or go in on Thursday and they ask why I didn't get the x-ray ----- I am seriously getting close to telling this doc's office to pull their heads out of their asses..... UGGGGHHHHHHHHHHH.

Yeah check in to that and follow up on it too, a missed appointment can run you up to 35 to 45 bucks, ya know they just nickel & dime you to death for a missed appointment, I'd rather spend that on a nice dinner

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I just hope you don't go the way of that African dicK - tay - tor who went doo-lally cuz of the same crap.

LOL --- LMAOAnn - this is actually left over from my slut days - I haven't been a slut for a while now --- at least 6 years -- I used to need both hands to count who I had been with in one week, now I can count who I have been with in the past 6 years on two hands......... and both feet (all toes).......and both ears.... and my nose (both nostrils).... and each ball.... and (but, I still don't think that would make me a slut anymore..... maybe not any less, but definitely not any more... )

You are jinxing yourself. Now Irene is going to Dog leg over to Ft Laudy and flood yall out. Appt cancelled.

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"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Good luck, hooker. Hopefully it won't hurt much and you'll be over this chapter soon.

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"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

I would have rather been your stand in for getting syphilis , that part sounds more fun .

LOL -And the keyboard is covered in water --- dayummm it!

Actually, it was rather fun getting it ---- if I could remember which person it was that gave it to me LOLJust kidding -Okay, I'm not kidding (Ann was right ---- I'm a slut) ---- yeah, right - the only thing getting any action is my hand --and I'll tell you, the ultimate in rejection is when your jacking off and your hand falls asleep.